Measuring impact of patient involvement

The patient community is a strong advocate for patient involvement in many aspects of healthcare such as service designing, research and development and HTA; this is because patients, as final users, are very much aware of what can be improved in healthcare systems.

Nevertheless, asserting that patient involvement is needed to pinpoint the “added therapeutic value” of new technologies and treatments, always triggers the question of its impact, if any. For many, the issue of measuring impact is raised frequently, as the facilitation of patient involvement comes with investments, setting up of programmes and infrastructures.

Our starting point is that value and value for money can be measured by the impact of patient involvement on decision making about pricing, reimbursement and disinvestment, assuming that tangible proof is needed. The act of providing accurate value assessment can be considered itself as a value of patient involvement.

Despite the identified need for evaluation of the impact of patient involvement, patient involvement is neither tracked nor evaluated in a systematic or in a standardised manner.

In the second part of the session we will try to untangle the knots that obstruct the systematic evaluation of patient involvement. We will explore studies and experiences from HTA, and other fields to show the potential of patient involvement in contributing to accurate value assessment, including value for money, for healthcare interventions. This can support health systems’ sustainability and help reduce wasteful spending.

Panellists:

• Nathalie Bere, Patient Engagement Liaison, European Medicines Agency (EMA)
• Irina Cleemput, Senior Health Economist, Belgian Healthcare Knowledge Centre
• Anke-Peggy Holtorf, Project Coordinator, HTAi Patient and Citizen Involvement Interest Group
• Paul Robinson, EU Patient Engagement Lead, Merck Sharp & Dohme (MSD)
• Donna Walsh, Executive Director, European Federation of Neurological Associations
• Elena Petelos, Advisory Board Member, European Forum for Primary Care
• Dimitra Lingri, Head of Legal Department, Greek National Organization for the Provision of Health Services
• Guendalina Graffigna, Director, EngageMinds-Hub